Aa
72 weeks on treatment
Hi. I have a questions, some doctors have suggested to take treatment for 72 weeks with gen 1b. any ideas why?
thankyou all for your generous and thoughtful feedback...
pkcolo, cuteus, nygirl, and everyone else i didn't mention...
my hep dr's are impressed with what is going on here...
be well.
pkcolo, cuteus, nygirl, and everyone else i didn't mention...
my hep dr's are impressed with what is going on here...
be well.
PK says: So here's what I'd do. I would get get regular liver function tests. It requires a simple blood draw with quick results.
If the viral activity increases the ALT/AST/GGT will rise. If elevated labs occur on repeated exams then a bx could be indicated. How often to get those labs can be answered by your hepatologist.
-------------------------------------------------------------
PK,
Well stated and I agree with much of your reasoning, and personally I would not treat given the circumstances. That said, a case could be made for treating geno 1's with little or no liver damage. The Medscape article noted above presents one such argument, and there are others, including some here who have decided to take that step for a number of reasons.
Moving on -- and perhaps I'm reading it wrong -- I'm unaware of a fast relationship between liver enzyme levels and viral load. (I've had high enzymes and low viral load and vice versa during the course of my disease.) So, if you want to track viral load, it seems the best thing would be to do more frequent PCR's. In addition, while low pre-tx viral load is a positive predictive factor in treating, my understanding is there's also no relationship between viral load and liver damage. (Many have high viral load and little damage and vice versa.
That said, I think enzyme tracking is important as an indicator of inflammation and point-in-time liver function, but either needle biopsy, or the newer Fibroscan device are more specific to determining actual liver damage/fibrosis progression and therefore to the treat or not-to-treat decision.
If logistics permit, a good combination might be a needle biopsy every 3-5 years with yearly Fibroscans. Should the Fibroscan pick up a major uptick in Fibrosis, then another needle biopsy might be used to confirm. Some also put weight on some of the blood marker tests like Fibrosure -- especially at the two ends of the Spectrum (stage 0-1 and 4). Something else that might be thrown in the mix.
-- Jim
If the viral activity increases the ALT/AST/GGT will rise. If elevated labs occur on repeated exams then a bx could be indicated. How often to get those labs can be answered by your hepatologist.
-------------------------------------------------------------
PK,
Well stated and I agree with much of your reasoning, and personally I would not treat given the circumstances. That said, a case could be made for treating geno 1's with little or no liver damage. The Medscape article noted above presents one such argument, and there are others, including some here who have decided to take that step for a number of reasons.
Moving on -- and perhaps I'm reading it wrong -- I'm unaware of a fast relationship between liver enzyme levels and viral load. (I've had high enzymes and low viral load and vice versa during the course of my disease.) So, if you want to track viral load, it seems the best thing would be to do more frequent PCR's. In addition, while low pre-tx viral load is a positive predictive factor in treating, my understanding is there's also no relationship between viral load and liver damage. (Many have high viral load and little damage and vice versa.
That said, I think enzyme tracking is important as an indicator of inflammation and point-in-time liver function, but either needle biopsy, or the newer Fibroscan device are more specific to determining actual liver damage/fibrosis progression and therefore to the treat or not-to-treat decision.
If logistics permit, a good combination might be a needle biopsy every 3-5 years with yearly Fibroscans. Should the Fibroscan pick up a major uptick in Fibrosis, then another needle biopsy might be used to confirm. Some also put weight on some of the blood marker tests like Fibrosure -- especially at the two ends of the Spectrum (stage 0-1 and 4). Something else that might be thrown in the mix.
-- Jim
cbueno: there was no chastising in my post, and has nothing to do with you posting a month later, the same question that was addressed at that post and one other prior to that one. What was meant is that the members then, which happen to be the members today, posted the reasons they used to make their decissions, either to tx or wait. they stated what they would do in your case, much like today. Your last posting said that you had made your mind up and will not put these poisons in your body. Which is a fine decission for you, given how you felt then. But it seems that it is not over, and you are still undecided, you are once more getting the members take on what they would do in your case and their reasons for tx or waiting.
What my post to you means is that, in spite of your last post before this one, you were actually still undecided and in conflict. Nothing we tell you here is swaying you one way or another. Perhaps you need more than this board or any board, that is reality based on your postings, not chastising. Give it a thought, perhaps you need to speak with some sort of counselor/advisor that can assist you in coming to terms with living with the virus, since you have posted that you don't want these poisons in your body at this time.
Sometimes there is no way to sugarcoat a suggestion. My hope is that you can come to terms with your decission.
What my post to you means is that, in spite of your last post before this one, you were actually still undecided and in conflict. Nothing we tell you here is swaying you one way or another. Perhaps you need more than this board or any board, that is reality based on your postings, not chastising. Give it a thought, perhaps you need to speak with some sort of counselor/advisor that can assist you in coming to terms with living with the virus, since you have posted that you don't want these poisons in your body at this time.
Sometimes there is no way to sugarcoat a suggestion. My hope is that you can come to terms with your decission.
I said previously: I've had high enzymes and low viral load and vice versa during the course of my disease.
----------------------------------------------------
A more accurate statement would be that my viral load has fluctuated wildly in the past four years (30 million IU/ml to I believe 14,000 IU/ml) with no discernible difference in liver enzymes.
----------------------------------------------------
A more accurate statement would be that my viral load has fluctuated wildly in the past four years (30 million IU/ml to I believe 14,000 IU/ml) with no discernible difference in liver enzymes.
sorry, you did not call them poisons;
"Cbueno
02/19/2006
C24 wklaw mr law... I'm also 54 and have very similar ast/alt bx reads...grade 1, stage 1, type 1a.. my profile is pretty much the same as yours... I found out i had hep c 6 years ago and every 6 months do a full blood, every 3 yrs a bx, have seen several heptologists at ucsf, ucla, top dogs at sloan, you name it i've done it...
most western medical cowboys are spring loaded to TREAT... they all should be required to check this board once a week and they would re-think what they are saying. when you get your blood work, bx, fib, etc you need to take charge and know it better than your docs... there are people on this post that are far better informed about the success/sides/quality of life/ long term pros and cons after tx, etc.
i'll continue to do my blood every 6 months, live like an olympic ath. BUT I WILL NOT TREAT... if I ever get to the point where my liver is failing, which i highly doubt, i'll deal then.
I will not blast myself with this stuff when i feel pretty fine. if my mind gets a littel hazy and my blood/bx reads are the same i'll chalk it up to genetics....
don't drink or smoke and get some tail."
there are only TWO options with hep c: to tx or not to tx. No one can make it for us, but not treating does not mean you should not continue checking the latest hcv news, while living healthy.
I do wish you enlightment and acceptance.
"Cbueno
02/19/2006
C24 wklaw mr law... I'm also 54 and have very similar ast/alt bx reads...grade 1, stage 1, type 1a.. my profile is pretty much the same as yours... I found out i had hep c 6 years ago and every 6 months do a full blood, every 3 yrs a bx, have seen several heptologists at ucsf, ucla, top dogs at sloan, you name it i've done it...
most western medical cowboys are spring loaded to TREAT... they all should be required to check this board once a week and they would re-think what they are saying. when you get your blood work, bx, fib, etc you need to take charge and know it better than your docs... there are people on this post that are far better informed about the success/sides/quality of life/ long term pros and cons after tx, etc.
i'll continue to do my blood every 6 months, live like an olympic ath. BUT I WILL NOT TREAT... if I ever get to the point where my liver is failing, which i highly doubt, i'll deal then.
I will not blast myself with this stuff when i feel pretty fine. if my mind gets a littel hazy and my blood/bx reads are the same i'll chalk it up to genetics....
don't drink or smoke and get some tail."
there are only TWO options with hep c: to tx or not to tx. No one can make it for us, but not treating does not mean you should not continue checking the latest hcv news, while living healthy.
I do wish you enlightment and acceptance.
Hi cbueno.
I think you already know the best course to take. But maybe this will help to affirm it for you. Working within the context of your own personal situation, see if you can make a list of 4 points in favor of tx (at this point in time) that carry as much weight as the 4 points you just posted.
3-5 years for another bx in your case is very reasonable IMO. And it's a standard recommendation in cases like yours. Stories of fast progression coming out of nowhere are not well represented in situations such as yours. When these mostly anecdotal stories are probed ,many (not all, by any means), end up showing a direct link between fast progression and lifestyle. And some are the result of inherent discrepancies that occur in different sample locations at bx as well as different interpetations by different pathologists on similar slides. Some can be caused by newly introduced rx drugs into your medication list as well,etc,etc.. In a scenario such as yours fast progression should not be a highly placed concern if there aren't any lifestyle factors present which could result in increased progression rates.
So here's what I'd do. I would get get regular liver function tests. It requires a simple blood draw with quick results.
If the viral activity increases the ALT/AST/GGT will rise. If elevated labs occur on repeated exams then a bx could be indicated. How often to get those labs can be answered by your hepatologist.
If 3 doctors turned down my money (none pushed for tx) I would definitely have to include this in the equation. It's like a mechanic who can't find anything to fix,fill, or replace, when you take the car in to have the oil changed. ;)
SVR rates for 1b are not quite as good as 1a. The SVR rate for genotype 1 (includes subtypes a and b) is 30-45%. The wide range is attributed to the many pre-tx predictors of response once they are factored in. Starting vl is the biggest of these.
Cbueno I have to tell you that I am impressed with your determination to get all views to make an informed decision.
While I certainly put weight on personal experiences ,I also realize that hepatologists in most cities treat hundreds of HCV patients yearly ,get CME,read journals,conduct trials,attend poster presentations, meetings, and seminars, and are privy to clinical data that hasn't been released. For these reasons I would personally put alot of weight in their assessments of the situation.
best regards,
PK
I think you already know the best course to take. But maybe this will help to affirm it for you. Working within the context of your own personal situation, see if you can make a list of 4 points in favor of tx (at this point in time) that carry as much weight as the 4 points you just posted.
3-5 years for another bx in your case is very reasonable IMO. And it's a standard recommendation in cases like yours. Stories of fast progression coming out of nowhere are not well represented in situations such as yours. When these mostly anecdotal stories are probed ,many (not all, by any means), end up showing a direct link between fast progression and lifestyle. And some are the result of inherent discrepancies that occur in different sample locations at bx as well as different interpetations by different pathologists on similar slides. Some can be caused by newly introduced rx drugs into your medication list as well,etc,etc.. In a scenario such as yours fast progression should not be a highly placed concern if there aren't any lifestyle factors present which could result in increased progression rates.
So here's what I'd do. I would get get regular liver function tests. It requires a simple blood draw with quick results.
If the viral activity increases the ALT/AST/GGT will rise. If elevated labs occur on repeated exams then a bx could be indicated. How often to get those labs can be answered by your hepatologist.
If 3 doctors turned down my money (none pushed for tx) I would definitely have to include this in the equation. It's like a mechanic who can't find anything to fix,fill, or replace, when you take the car in to have the oil changed. ;)
SVR rates for 1b are not quite as good as 1a. The SVR rate for genotype 1 (includes subtypes a and b) is 30-45%. The wide range is attributed to the many pre-tx predictors of response once they are factored in. Starting vl is the biggest of these.
Cbueno I have to tell you that I am impressed with your determination to get all views to make an informed decision.
While I certainly put weight on personal experiences ,I also realize that hepatologists in most cities treat hundreds of HCV patients yearly ,get CME,read journals,conduct trials,attend poster presentations, meetings, and seminars, and are privy to clinical data that hasn't been released. For these reasons I would personally put alot of weight in their assessments of the situation.
best regards,
PK
One thing that I've realized that a positive and determined attiude against HCV is an important ingredient in tx and dealing with the sx and test results. As we've read here 3a can be a mixed bag of triumph and disappointment. You've had a taste of the latter and I look forward to hearing about the former from you in the near future. I admire your determination.
It's great that you have taken the time to investigate your options to make a sound decision. I wish I had been as well advised as you. Good luck in your final decision.
I'm with Nimzovich on the thought that 5 years would be too long for another bx. I've heard a lot about the accelerated progression myself. Were I you, I would consider researching the new non-invasive fibrosis scans. Also, I'd consider a needle biopsy on a shorter timeframe.
I would not allow the prospect of acelerated damage to rush me into treating, I would simply be more dilligent about watching for progression than common wisdom dictates.
I would not allow the prospect of acelerated damage to rush me into treating, I would simply be more dilligent about watching for progression than common wisdom dictates.
Cubeno said: I've seen 3 heptologists in the last 8 weeks and 2 said DON't treat at this time.
-------------------------------------
That doesn't surprise me. Maybe if you saw ten hepatologists it would be 8-2 to wait, or maybe it would be 5 and 5. Or something else. Treating genotype 1's with little or no liver damage is one of the big controversies of treatment in the Hep C Medical Community. No right or wrong answer, only the answer that makes sense for you as an individual. To me, your 4-point analysis makes a lot of sense and shows you've done a lot homework.
To hear the doctors slug it out on this issue, check out:
http://www.medscape.com/viewprogram/2053
Access may require free Medscape registration but well worth it. Article is aptly named "Controversies in Treatment". Keep in mind it was written a few years ago, so some of the new drugs in the pipeline probably weren't factored in as heavily as they are today.
-- Jim
-------------------------------------
That doesn't surprise me. Maybe if you saw ten hepatologists it would be 8-2 to wait, or maybe it would be 5 and 5. Or something else. Treating genotype 1's with little or no liver damage is one of the big controversies of treatment in the Hep C Medical Community. No right or wrong answer, only the answer that makes sense for you as an individual. To me, your 4-point analysis makes a lot of sense and shows you've done a lot homework.
To hear the doctors slug it out on this issue, check out:
http://www.medscape.com/viewprogram/2053
Access may require free Medscape registration but well worth it. Article is aptly named "Controversies in Treatment". Keep in mind it was written a few years ago, so some of the new drugs in the pipeline probably weren't factored in as heavily as they are today.
-- Jim
Iliona said:I have a questions, some doctors have suggested to take treatment for 72 weeks with gen 1b. any ideas why?
------------------------------------------------------
Not asking for names, but when you say "some doctors" -- are you referring to the doctor you treat with, other doctors you consulted with, or perhaps things you've heard in discussion groups like this? In other words, are you referring to 1b's in general or specifically your individual case? If the latter (your case) would you mind sharing with us your stats -- age, stage, pre-tx viral load, normal or overweight, etc.
I consulted with four hepatologists and three only extend beyone 48 weeks treatment if there's not an adequate viral response at 12 weeks. The fourth doctor -- my treating doctor -- feels pre-treatment negative factors warrant some extension beyond 48 weeks.
-- Jim
------------------------------------------------------
Not asking for names, but when you say "some doctors" -- are you referring to the doctor you treat with, other doctors you consulted with, or perhaps things you've heard in discussion groups like this? In other words, are you referring to 1b's in general or specifically your individual case? If the latter (your case) would you mind sharing with us your stats -- age, stage, pre-tx viral load, normal or overweight, etc.
I consulted with four hepatologists and three only extend beyone 48 weeks treatment if there's not an adequate viral response at 12 weeks. The fourth doctor -- my treating doctor -- feels pre-treatment negative factors warrant some extension beyond 48 weeks.
-- Jim
(1) My personal story says treat. I got Hep C (1b) at ~18. At 45 my biopsy showed no fibrosis (0/6) and mild inflammation (1/4). Five years later my next biopsy showed bridging fibrosis (3/4) and mild-moderate inflammation (2-3/4). As my GI said "its moving along brusquely". Turns out its not uncommon for damage to kick into gear in > 45-50 year old patients. I also think I've read that you have a better shot at SVR if you treat early, rather than late (perhaps after liver damage has started. If you don't treat, do make sure to biopsy every 3-5 years as suggested.
(2) I am on a 72 week treatment course on the advice of a hepatologist to my GI. My 4-week PCR showed negligible movement (151010 -> 133127) and the hepatologist suggested if I was able to get undetectable (I did at 5 mos) to go for 72 weeks. This is not standard protocol (I think the standard protocol is ~5 years old), but I get the impression for slower responders who statistically are unlikely achieve to achieve SVR with standard 48 weeks some doctors think the extra 24 weeks will increase the likelihood of SVR. This may simply be another version of the 36 weeks after undetectable. Also, there is the notion of interferon as an anit-fibrotic, so in my case of significant liver damage maybe the more interferon the better :-)
(2) I am on a 72 week treatment course on the advice of a hepatologist to my GI. My 4-week PCR showed negligible movement (151010 -> 133127) and the hepatologist suggested if I was able to get undetectable (I did at 5 mos) to go for 72 weeks. This is not standard protocol (I think the standard protocol is ~5 years old), but I get the impression for slower responders who statistically are unlikely achieve to achieve SVR with standard 48 weeks some doctors think the extra 24 weeks will increase the likelihood of SVR. This may simply be another version of the 36 weeks after undetectable. Also, there is the notion of interferon as an anit-fibrotic, so in my case of significant liver damage maybe the more interferon the better :-)
If you're looking for opinions, I say wait until better treatment comes along. You're well right now. Looks like some good treatment developments will come along in the next few years. The risk/benefit analysis is complicated but we don't even know all the risks of treatment. I've had a bummer of a last week (understatement) with the meds--and if I could decide what to do today, I wouldn't treat myself right now. Once you start though, it's almost impossible to stop because you're making such a huge investment in it each week.
1st i want to say to all of you out there that took the calculated leap to tx, congratulations... i read this board everyday...My decision is no more difficult than anything you all have encountered... The info here is far more informative than you can glean from dr's... i come from a family full of dr's.
i would like to jump in and treat even if it was only a 20% chance to clear but i'm reluctant:
1)I feel and function fine
2)minimal progression after 25-35 years
3)2 heptologists who say wait, it's slow if moving at all and other drugs are in the pipe should i start to slide fast in 4-5 yrs
4)I'm not worried about the feeling terrible sides, it's the potential for permanent damage that i read and hear about that causes me Caution.
where's pkcolo when you need his words of sage wisdom... to the person who chastised me for posting again after a month, i hope you live happy to 150 yrs of age...
i would like to jump in and treat even if it was only a 20% chance to clear but i'm reluctant:
1)I feel and function fine
2)minimal progression after 25-35 years
3)2 heptologists who say wait, it's slow if moving at all and other drugs are in the pipe should i start to slide fast in 4-5 yrs
4)I'm not worried about the feeling terrible sides, it's the potential for permanent damage that i read and hear about that causes me Caution.
where's pkcolo when you need his words of sage wisdom... to the person who chastised me for posting again after a month, i hope you live happy to 150 yrs of age...
I hear you about the stress - wish we all had someone to make the ALWAYS RIGHT decisions for us. Problem is, we are it. I am treating with a bx like yours and glad I am. I want to get this over with once and for all. I have known I had the virus since 1992 and wondered about what it was doing all this time --- wondered and done nothing. I am not sure what the magic trigger was for me - age I think - 57 when I began treating. It really is supposed to be easier on the system when you are younger, but I personally think a lot of the way we handle tx is in the genes. If you are pretty healthy to begin with and have a good immune system (I did) it can be pretty smooth.
Treatment can be difficult, but there are many of us here who are doing it, not telling anyone, and working full time plus..... so doesn't that tell you it can be done?
Kathy
Treatment can be difficult, but there are many of us here who are doing it, not telling anyone, and working full time plus..... so doesn't that tell you it can be done?
Kathy
anyone have any stats on what the " clear" % is for those who TX Geno 1, 1a, 1b...
I've just received my second BX in 5 years and it reads the same as 5 years ago... Grade 1-2, stage 1...
Focal mild lymphocytic infiltrates of portak tracts, mild interface hepatitis, focal mild necroinflammatory activity.
no iron deposion
no steatosis
Mild Portal Fibrosis
I've seen 3 heptologists in the last 8 weeks and 2 said DON't treat at this time.
"At this point, I would not recommend treatment with PEG-interferon and ribavirin UNLESS it would give you piece of mind to give your best shot at eradicating the virus. Based on your history (likely infection for between 25-35 yrs, very mild liver histology on 2 biopsies 5-6 years apart), your risk of developing serious liver disease is low. Furthermore, if you did progress, it would likely occur slowly and you would likely have ample time to choose to respond (i.e. treat) at that point".
The 3rd fellow is fine if I don't treat but all say BX every 3-5 yrs.
Any thoughts on this? one side of me says give it a shot and the other is why? I feel fine... My only stress is trying to make this decision.
I've just received my second BX in 5 years and it reads the same as 5 years ago... Grade 1-2, stage 1...
Focal mild lymphocytic infiltrates of portak tracts, mild interface hepatitis, focal mild necroinflammatory activity.
no iron deposion
no steatosis
Mild Portal Fibrosis
I've seen 3 heptologists in the last 8 weeks and 2 said DON't treat at this time.
"At this point, I would not recommend treatment with PEG-interferon and ribavirin UNLESS it would give you piece of mind to give your best shot at eradicating the virus. Based on your history (likely infection for between 25-35 yrs, very mild liver histology on 2 biopsies 5-6 years apart), your risk of developing serious liver disease is low. Furthermore, if you did progress, it would likely occur slowly and you would likely have ample time to choose to respond (i.e. treat) at that point".
The 3rd fellow is fine if I don't treat but all say BX every 3-5 yrs.
Any thoughts on this? one side of me says give it a shot and the other is why? I feel fine... My only stress is trying to make this decision.
72 weeks gives me the chills but I know if my doctor told me that was the deal I would follow his advice. I'm 1A and and my 12 week was great and the doctor told me that a total of 48 was all I needed to do. I don't really know how he calculates this but it pretty much matched what the Pegasus people told me to expect. I hope your cleared on your next visit and the doctor feels better about stopping it at 48. I'll keep you in my prayers. Dale
Illona,
there are a few really good reasons to go on for longer. these would be negative clearance factors like, being overweight, high bmi, older age, fatty liver, having very advanced liver damage, or being a type 1, which is considered harder to treat. stuff like that, would make a dr think its a good move...
it sounds like you have a carring dr that is on the ball...no messin arround!!!
i pray your upcoming tx goes smoothly and kicks those buggers in the butt for good...
sandi
there are a few really good reasons to go on for longer. these would be negative clearance factors like, being overweight, high bmi, older age, fatty liver, having very advanced liver damage, or being a type 1, which is considered harder to treat. stuff like that, would make a dr think its a good move...
it sounds like you have a carring dr that is on the ball...no messin arround!!!
i pray your upcoming tx goes smoothly and kicks those buggers in the butt for good...
sandi
My 2 shot went well. No side effect at all.. My doc. took a blood on sunday. Still waiting for the result... I will keep you posted what is going on.
thank you
ilona
thank you
ilona
I'm not positive but I believe lenggth of tx has alot to do with the results of the 1st pcr after starting tx. Many protocols call for 36 weeks after achieving a undetectable pcr. Also I think your age ,liver stage and viral load , and how fast your responding to tx are also determining factors.
You started tx the same day as me. How did shot 2 treat you fri.? Mine mad me tired and achey but this one didn't give me the bone chilling shakes I experienced on the 1st one. Did you get blood drawn for the cbc on fri? My team did the draw and I'm waiting to see how my hmg is holding up. Please post how your doing.
Dyce
You started tx the same day as me. How did shot 2 treat you fri.? Mine mad me tired and achey but this one didn't give me the bone chilling shakes I experienced on the 1st one. Did you get blood drawn for the cbc on fri? My team did the draw and I'm waiting to see how my hmg is holding up. Please post how your doing.
Dyce
From what I've seen on here they now believe extending treatment is better for the 1's and 4's to get to SVR. Also may have to do with your PCR results. Let us know how you do.
Beagle
Beagle
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